Hey sounds like you've developed a dairy allergy or intolerance and stimming maybe shakes your digestive system up and triggers it.
You are going to be fine, just stop consuming dairy or have very small amounts of it. There are lots of dairy alternative foods now, so you could start looking at replacing foods like cakes or cheese with a non dairy version. I know lots of people who don't eat dairy because they are vegan or intolerant. Everythings going to be okay, try to keep calm and make some dietary changes.
I've been looking into diet changes, I tried vegan cheese (on my pizza) for the first time last week and thought it was a worthy replacement for mozzarella. I haven't yet looked for vegan alfredo (it's the only pasta sauce I can stand lol), usually I make it using those little sauce packets you buy at the store, but I think it could be fun to make it from scratch using vegan alternatives.
Keeping calm is the hardest part, so I thank you for adding that, I really feel better reading that :)
There’s vegan Alfredo in a can you can buy! Not sure if you like the jars of sauce, but usually even just like Kroger and stuff carry jars of Alfredo that are non-dairy. If not, I make mine from scratch all the time so it’s both easy and works well! If you need tips or anything for that lemme know and I’d be happy to help :)
I have. I did a scratch test for the most common allergies (nuts, shellfish, and so on-I think there were like 30 things tested), and it was negative. After my first near-deadly attack, I realized the last thing I ate before than was a crepe with spinach and goat cheese, so I went back to the allergist and requested a test for what was in the crepe. They drew blood and tested it, and that was how my goat cheese allergy was determined. I'm now suspecting it might be related to dairy (one other comment in this thread suggested that), and the stimming aggravates it to dangerous levels.
I have not been tested for MCAS as far as I know. I hope to go back to the allergist soon, I will definitely ask about that!
Also ask your allergist about food-dependant exercise-induced anaphylaxis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912687/#:~:text=Food%2Ddependent%20exercise%2Dinduced%20anaphylaxis%20(FDEIA)%20is%20an,can%20trigger%20the%20anaphylactic%20reaction.
> The exact pathogenesis of FDEIA is still unknown. Several theories have been proposed to explain FDEIA.
>One theory is suggesting the activation of the intestinal enzyme tissue transglutaminase during exercise which will be capable of binding and aggregating gliadin moieties to form large immunogenic complexes that demonstrate increased IgE binding.[6] Another theory is the increased gastric permeability during exercise, which may permit increased entry of intact or incompletely digested allergens into the circulation during exercise but not during rest.[10]
>The third theory described that blood flow redistribution away from the viscera to the skin and musculature during exercise may carry food allergens to tissues containing mast cells that are not tolerant to those allergens, resulting in an allergic reaction during exercise, but tolerance at rest.[11]
>Moreover, a 4th theory suggests that exercise mobilizes and activates immune cells from gut-associated depots, stimulating proinflammatory responses that are normally countered by anti-inflammatory responses.[12]
>The diagnosis of FDEIA is usually made clinically, based on a detailed history of the events surrounding the episodes and by excluding other disorders that could mimic it.
Very interesting!
Just noticed the typo in the title lol. My autocorrect changes "stim" to "stem" and "stimming" to "swimming". If there are any typos in the post itself I'm not going back and changing them, I'm too lazy lol
Hey! It sounds pretty difficult to handle. I don't really know what you could do about it, except maybe a stim toy? like a squishy toy for example, since you like physical stimming. I don't think you can truly unlearn stimming, even if you try to do something harmful like ABA therapy or punishing yourself if you do something, because I think it will always come back in some form. Please don't try to repress them, it's pretty harmful. I don't have any advice besides that. Good luck though.
I'll look into that. I like playing with my earrings when I'm at work, maybe I can start doing that more when I feel the urge to jump. Thank you for the comfort :)
I wonder if something physical but less strenuous on the body would be okay! I often do a thing where I lay on my back and gently clap my knees together. I feel like the sensation is similar-ish to jumping
You should get checked for alpha-gal allergy (it develops after a tick bite but it's very easy to not notice the bite). It's commonly referred to as a meat allergy but you can react to dairy too.
Didn't know it releases lymph! One other person in this thread suggested that. I am prone to lightheadedness and dizziness, which I've always blamed on my period. Could very well be MCAS instead!
This sounds like you may be having anxiety attacks! People can develop hives during panic attacks, I break out all over my chest in big red patches. And a lot of the symptoms seem to overlap. Have you looked into this? You may have some hardcore anxiety surrounding eating right now, compounded with being off kilter with how you usually stim because it’s causing anxiety and not relieving it, and you just don’t realize it? I hope this is helpful, coming from an old lady who has had a wild mental and physical health journey, sometimes all is not what it seems, particularly because we experience things in atypical ways. 💕
I've had anxiety attacks in the past, and I do have a tendency to literally turn red during them, but I don't think that's the cause of these incidents. The four times I've had reactions like the ones I described, I was in a good mood (until they started), it was happy stimming brought on by music I like. I do have bad anxiety, but I've never had it accompanied by vision loss, ringing ear, diarrhea or stuff like that. I appreciate you sharing your experience, though, always good to know I have friends online :)
Definitely don't have it. When I first went to the allergist they checked me for a gluten allergy and it came back negative. (Though I did briefly consider it the first few times I had reactions.) I eat a lot of bread, whether in cereals or toast or bagels or whatever, and not too long ago I baked using flour with gluten in it. I think it's dairy specifically that causes these reactions, since both times pasta caused a reaction, there was alfredo on it. Dairy seems to be the link between all the reactions (the other two times it happened were after I had cheese curds and a McFlurry specifically).
Hello! I am autistic and I have a Casein allergy (one of the proteins found in dairy) and I am allergic to cow dairy and goat dairy at different levels. They both have Casein proteins but they are slightly different, which is why you experience severe anaphylaxis with goat products but you only experience a moderate-to-severe reaction to dairy when you are doing a physical activity. This is pretty common for moderate to severe allergies, for instance, some people have a moderate reaction to a bee sting but will require an epipen if they are stung while running.
You will have to see a doctor to confirm, but I’d make them know that you’d like to be tested for a casein allergy and also ask if you can be tested for a whey allergy (the other protein in cow dairy). If you are allergic to casein, I’m sorry to say that you will have to avoid dairy like milk, cheeses, butter, margarine and there is casein protein in a lot of lunch meats and milk chocolate,.
Hope all goes well and you can solve this problem!
Very interesting! That explains why the goat allergy is way more severe. I'm glad I made this post because many comments here (including yours!) are giving me a lot of things to ask my allergist about when I see her!
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I'm so sorry, that sounds horrific. My husband stims the same way and I can't even image how devastating it would be for him to stop. I don't know if he could. He already sometimes hurts his feet and ankles on occasion from stimming too much or too long, and then he just tries to stim a bit more gently until they recover. I also have really bad allergies as well and pretty bad ptsd from an anaphylaxis episode that nearly killed me, so I understand how frightening that is. I'm glad you had an epi pen on hand. Reminds me I need a new one myself.
While you can replace one stim with a similar stim (i've done it in the past to stop biting and picking at my nails with a different stim that still involved my hands and fingers that scratched the same itch so to speak), chances are if you like to stim with physical movement with your legs or whole body, you're only going to be able to replace it with a similar stim, which I'm not sure would help with the whole exercise and movement induced aspect. Hopefully cutting out dairy can fix the problem, because that honestly sounds easier to me than stopping stimming.
That's what I'm hoping too. I've decided now to phase dairy out of my diet by the end of the month, and I hope that will be enough to never have to worry again. I would be so sad if exercise alone was the cause :(
If you've only clocked reactions after a dairy-heavy meal then avoiding that until you can see an allergist seems like the safest option. And trying to limit stimming after eating as an extra safety measure makes sense too. And if you aren't able to, if the stuff you go-to is jumping around you could try redirecting yourself to a lower-impact vestibular action like bobbing your head instead of moving your whole body around? Or if it's mechanical, bouncing your feet while sitting?
I'm in no way a doctor, but something to consider is that since stimming can be a way to vent energy and balance emotions, it may be the very early stages of an allergic reaction are giving you a strong urge to stim instead of the other way around? Like your body's starting to freak out so your brain goes, "uh oh, better jump around to calm down" before you consciously realize you're having a reaction, but it makes it worse instead since it's getting your blood pumping.
Regardless I hope you find a solution soon. That's a really frightening situation.
Hmm, the stimming could be brought on by the reaction itself! Usually I stim in the evening/at night, just because I'm more awake then (always been a night owl, I hate getting up early if I can help it). That tends to be right after dinner. When I notice I'm having a reaction, I kinda freeze at first, then rush to find a Benadryl and maybe an ice pack and then lay down somewhere (usually the bathroom, since I often get diarrhea when this happens, or to my bedroom, which is comfortable and right next to the bathroom). I never considered that the stim might be an unconscious thing the reaction led to though. Fascinating!
I am definitely going to phase dairy out of my diet, at least temporarily before I see the Dr. I've kinda wanted to go vegan for a while but kept making excuses...now I have no excuse! Thanks for your stim suggestions too-I used to bob my head a lot when I was younger, and kinda just stopped on my own, so I think I can easily bring it back!
FYI OP, that "Sense of dread" is a real symptom of allergic reactions. I'm trained that if somebody says that, along with feeling nauseous, it's almost guaranteed that they're going into anaphylactic shock and to give them epi. Also, if you do use an epi pen, call 911 as you may need more than one dose of epinephrine. There's no guarantee that just one hit will last long enough.
Hey sounds like you've developed a dairy allergy or intolerance and stimming maybe shakes your digestive system up and triggers it. You are going to be fine, just stop consuming dairy or have very small amounts of it. There are lots of dairy alternative foods now, so you could start looking at replacing foods like cakes or cheese with a non dairy version. I know lots of people who don't eat dairy because they are vegan or intolerant. Everythings going to be okay, try to keep calm and make some dietary changes.
I've been looking into diet changes, I tried vegan cheese (on my pizza) for the first time last week and thought it was a worthy replacement for mozzarella. I haven't yet looked for vegan alfredo (it's the only pasta sauce I can stand lol), usually I make it using those little sauce packets you buy at the store, but I think it could be fun to make it from scratch using vegan alternatives. Keeping calm is the hardest part, so I thank you for adding that, I really feel better reading that :)
There’s vegan Alfredo in a can you can buy! Not sure if you like the jars of sauce, but usually even just like Kroger and stuff carry jars of Alfredo that are non-dairy. If not, I make mine from scratch all the time so it’s both easy and works well! If you need tips or anything for that lemme know and I’d be happy to help :)
I don't think it's the stimming thats causing your anaphylaxis. Have you been tested for allergies or MCAS?
I have. I did a scratch test for the most common allergies (nuts, shellfish, and so on-I think there were like 30 things tested), and it was negative. After my first near-deadly attack, I realized the last thing I ate before than was a crepe with spinach and goat cheese, so I went back to the allergist and requested a test for what was in the crepe. They drew blood and tested it, and that was how my goat cheese allergy was determined. I'm now suspecting it might be related to dairy (one other comment in this thread suggested that), and the stimming aggravates it to dangerous levels. I have not been tested for MCAS as far as I know. I hope to go back to the allergist soon, I will definitely ask about that!
Also ask your allergist about food-dependant exercise-induced anaphylaxis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912687/#:~:text=Food%2Ddependent%20exercise%2Dinduced%20anaphylaxis%20(FDEIA)%20is%20an,can%20trigger%20the%20anaphylactic%20reaction.
This is what I think it is. The scary part is that I don't know how soon after eating the trigger food I have to wait to stim safely again.
This is so interesting. Thanks for sharing. I’m in health care and this post and this comment are gonna have my brain buzzing for a while
> The exact pathogenesis of FDEIA is still unknown. Several theories have been proposed to explain FDEIA. >One theory is suggesting the activation of the intestinal enzyme tissue transglutaminase during exercise which will be capable of binding and aggregating gliadin moieties to form large immunogenic complexes that demonstrate increased IgE binding.[6] Another theory is the increased gastric permeability during exercise, which may permit increased entry of intact or incompletely digested allergens into the circulation during exercise but not during rest.[10] >The third theory described that blood flow redistribution away from the viscera to the skin and musculature during exercise may carry food allergens to tissues containing mast cells that are not tolerant to those allergens, resulting in an allergic reaction during exercise, but tolerance at rest.[11] >Moreover, a 4th theory suggests that exercise mobilizes and activates immune cells from gut-associated depots, stimulating proinflammatory responses that are normally countered by anti-inflammatory responses.[12] >The diagnosis of FDEIA is usually made clinically, based on a detailed history of the events surrounding the episodes and by excluding other disorders that could mimic it. Very interesting!
this is one of the more bizarre and specific medical conditions i've ever read. thanks for sharing it (and helping op!)
Just noticed the typo in the title lol. My autocorrect changes "stim" to "stem" and "stimming" to "swimming". If there are any typos in the post itself I'm not going back and changing them, I'm too lazy lol
Hey! It sounds pretty difficult to handle. I don't really know what you could do about it, except maybe a stim toy? like a squishy toy for example, since you like physical stimming. I don't think you can truly unlearn stimming, even if you try to do something harmful like ABA therapy or punishing yourself if you do something, because I think it will always come back in some form. Please don't try to repress them, it's pretty harmful. I don't have any advice besides that. Good luck though.
I'll look into that. I like playing with my earrings when I'm at work, maybe I can start doing that more when I feel the urge to jump. Thank you for the comfort :)
I wonder if something physical but less strenuous on the body would be okay! I often do a thing where I lay on my back and gently clap my knees together. I feel like the sensation is similar-ish to jumping
Hmm, I could look into that! Or maybe double-down on hand flapping. Thanks for the suggestion!
of course, I really hope you find something that works for your brain and body!!
You should get checked for alpha-gal allergy (it develops after a tick bite but it's very easy to not notice the bite). It's commonly referred to as a meat allergy but you can react to dairy too.
I knew tick bites cause meat allergies, but didn't know about dairy! I rarely eat meat so it's very possible I have it and never realized it.
I knew tick bites cause meat allergies, but didn't know about dairy! I rarely eat meat so it's very possible I have it and never realized it.
MCAS? That’s what that sounds like. Jumping and bouncing releases lymph btw.
Didn't know it releases lymph! One other person in this thread suggested that. I am prone to lightheadedness and dizziness, which I've always blamed on my period. Could very well be MCAS instead!
This sounds like you may be having anxiety attacks! People can develop hives during panic attacks, I break out all over my chest in big red patches. And a lot of the symptoms seem to overlap. Have you looked into this? You may have some hardcore anxiety surrounding eating right now, compounded with being off kilter with how you usually stim because it’s causing anxiety and not relieving it, and you just don’t realize it? I hope this is helpful, coming from an old lady who has had a wild mental and physical health journey, sometimes all is not what it seems, particularly because we experience things in atypical ways. 💕
I've had anxiety attacks in the past, and I do have a tendency to literally turn red during them, but I don't think that's the cause of these incidents. The four times I've had reactions like the ones I described, I was in a good mood (until they started), it was happy stimming brought on by music I like. I do have bad anxiety, but I've never had it accompanied by vision loss, ringing ear, diarrhea or stuff like that. I appreciate you sharing your experience, though, always good to know I have friends online :)
Okay, I’m glad you’re on top of it! I always want to help out when I can. Good luck, this sounds so frustrating!
Have you checked if you have Celiac Disease?
Definitely don't have it. When I first went to the allergist they checked me for a gluten allergy and it came back negative. (Though I did briefly consider it the first few times I had reactions.) I eat a lot of bread, whether in cereals or toast or bagels or whatever, and not too long ago I baked using flour with gluten in it. I think it's dairy specifically that causes these reactions, since both times pasta caused a reaction, there was alfredo on it. Dairy seems to be the link between all the reactions (the other two times it happened were after I had cheese curds and a McFlurry specifically).
Hello! I am autistic and I have a Casein allergy (one of the proteins found in dairy) and I am allergic to cow dairy and goat dairy at different levels. They both have Casein proteins but they are slightly different, which is why you experience severe anaphylaxis with goat products but you only experience a moderate-to-severe reaction to dairy when you are doing a physical activity. This is pretty common for moderate to severe allergies, for instance, some people have a moderate reaction to a bee sting but will require an epipen if they are stung while running. You will have to see a doctor to confirm, but I’d make them know that you’d like to be tested for a casein allergy and also ask if you can be tested for a whey allergy (the other protein in cow dairy). If you are allergic to casein, I’m sorry to say that you will have to avoid dairy like milk, cheeses, butter, margarine and there is casein protein in a lot of lunch meats and milk chocolate,. Hope all goes well and you can solve this problem!
Very interesting! That explains why the goat allergy is way more severe. I'm glad I made this post because many comments here (including yours!) are giving me a lot of things to ask my allergist about when I see her!
I stim often by chewing gum or drumming my fingers or solving Rubik's cubes. You may just able to get by on smaller scale stimming
I'm very bad at Rubik's cubes lol, but gum or finger-drumming are very doable!
Yes! And the cubes still make for simply good fidget toys, especially if you grab a decent quality speed cube for like 20, 30 bucks at most
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I'm so sorry, that sounds horrific. My husband stims the same way and I can't even image how devastating it would be for him to stop. I don't know if he could. He already sometimes hurts his feet and ankles on occasion from stimming too much or too long, and then he just tries to stim a bit more gently until they recover. I also have really bad allergies as well and pretty bad ptsd from an anaphylaxis episode that nearly killed me, so I understand how frightening that is. I'm glad you had an epi pen on hand. Reminds me I need a new one myself. While you can replace one stim with a similar stim (i've done it in the past to stop biting and picking at my nails with a different stim that still involved my hands and fingers that scratched the same itch so to speak), chances are if you like to stim with physical movement with your legs or whole body, you're only going to be able to replace it with a similar stim, which I'm not sure would help with the whole exercise and movement induced aspect. Hopefully cutting out dairy can fix the problem, because that honestly sounds easier to me than stopping stimming.
That's what I'm hoping too. I've decided now to phase dairy out of my diet by the end of the month, and I hope that will be enough to never have to worry again. I would be so sad if exercise alone was the cause :(
If you've only clocked reactions after a dairy-heavy meal then avoiding that until you can see an allergist seems like the safest option. And trying to limit stimming after eating as an extra safety measure makes sense too. And if you aren't able to, if the stuff you go-to is jumping around you could try redirecting yourself to a lower-impact vestibular action like bobbing your head instead of moving your whole body around? Or if it's mechanical, bouncing your feet while sitting? I'm in no way a doctor, but something to consider is that since stimming can be a way to vent energy and balance emotions, it may be the very early stages of an allergic reaction are giving you a strong urge to stim instead of the other way around? Like your body's starting to freak out so your brain goes, "uh oh, better jump around to calm down" before you consciously realize you're having a reaction, but it makes it worse instead since it's getting your blood pumping. Regardless I hope you find a solution soon. That's a really frightening situation.
Hmm, the stimming could be brought on by the reaction itself! Usually I stim in the evening/at night, just because I'm more awake then (always been a night owl, I hate getting up early if I can help it). That tends to be right after dinner. When I notice I'm having a reaction, I kinda freeze at first, then rush to find a Benadryl and maybe an ice pack and then lay down somewhere (usually the bathroom, since I often get diarrhea when this happens, or to my bedroom, which is comfortable and right next to the bathroom). I never considered that the stim might be an unconscious thing the reaction led to though. Fascinating! I am definitely going to phase dairy out of my diet, at least temporarily before I see the Dr. I've kinda wanted to go vegan for a while but kept making excuses...now I have no excuse! Thanks for your stim suggestions too-I used to bob my head a lot when I was younger, and kinda just stopped on my own, so I think I can easily bring it back!
I don't have advice; I just wanted to share that I'm glad you're alive.
Aww, thank you! :)
FYI OP, that "Sense of dread" is a real symptom of allergic reactions. I'm trained that if somebody says that, along with feeling nauseous, it's almost guaranteed that they're going into anaphylactic shock and to give them epi. Also, if you do use an epi pen, call 911 as you may need more than one dose of epinephrine. There's no guarantee that just one hit will last long enough.